The highs, lows, and adventures of living joyfully with chronic pain as a young adult

I hope life is treating you well. Here is part two of the pregnancy and childbirth with chronic pain series. Please comment with any questions or your personal experiences! Also, if you like the content you’re receiving, I would be grateful for any likes and shares 🙂

I’m still here! I know a lot of life has happened for us since my last post (like a baby)! How is everyone doing? Check out the video to learn more about my plans for some upcoming videos.

Also, y’all… the amount of technological struggle it’s taken to get this video up is ridiculous. I’m not sure who on earth gave a majorly sleep deprived momma (who didn’t write down ANY login information) free reign to create YouTube and blog accounts, but it was a terrible life decision 😂😂😂.

Dishes are a huge time and energy sucker for me. True for anyone, but especially true for anyone with chronic illness, we only have a limited amount of energy each day. I don’t know about you, but dishes are not where I want to spend that time and energy :).

We had a fun filled week last week as my SIL and her family came to visit before they move to TZ in August! Dinosaur museums, walking trails, pizza and ice cream making, and staying up after the kids went to sleep to visit, among other things, filled our week. They are such a wonderful blessing to us and I’m thankful for the time we got with them. Even though we were going a lot, we made sure to build in down time each day, and thankfully I was able to avoid any major flares.

In my head, I had grand plans of blog posts to get going, projects to start around the house, and business tasks to work on. However, I awoke Tuesday morning to a very sick and sad little one. It was tempting to be a little frustrated because I felt okay, but was not able to work on anything because A wants lots of extra nursing and constant holding. If I’m not flaring, I feel like I need to be as productive as possible. But this is absolutely false. There may be dishes everywhere and my bedroom is overtaken with laundry, but I am doing the task I need to right now, sitting and watching a movie (and both of us taking a short nap earlier because she shared the snots with me. I thought moms weren’t supposed to get sick?!).

Sometimes, it’s a flare that wrecks our plans. Sometimes, our tiny humans need us. And sometimes, we just need to rest for us. And that’s okay, friends. The laundry doesn’t have any pressing engagements and I’m pretty sure the dishes can pencil you in later ;).

Potlucks, fellowship meals, dinners, parties, showers, game/movie nights… Until I had food allergies and other dietary restrictions to help manage chronic pain, I never realized how much social events always seem revolve around one thing in particular, FOOD!

I know at least for me, it’s very tempting and a lot simpler to just avoid events like that because of the hassle of figuring it out. But (as J likes to point out to me, trying to be all reasonable and well balanced, psh…)! We need to have some social interaction and a sense of normalcy to survive and thrive with chronic pain, even if we have to be a little unorthodox in how we do that.

Below are a few options and tips to consider to help you still partake in different social events:

Pack your own food. I do this a LOT, even when going to fast food restaurants, so I know I’ll always have something on hand that I know I can eat.

Look up the menu before to find something you can eat while selecting a restaurant to go to with friends. Most chain restaurants have their menus online and many have allergen menus you can look at.

Eat prior to the event or leave snacks in the car. Can’t pack food without it being totally weird (like a wedding reception)? Simply eat before the event or bring snacks with you. Bringing snacks also gives you a good excuse to take a break from the noise and stimulation to step outside or into an empty room to eat and recharge for a moment.

Prepare something you can eat to contribute to potluck. PRO TIP: Worried the one food you can eat will be all gone by the time you go through the line? Write on a card next to the dish that the food is X,Y,Z free and it will scare most people into leaving it alone, even if that dish doesn’t normally have those items in it ;p.

I can hear a lot of the arguments against these tips (I’m going to be too tired, that’s way too much work, people are going to think I’m a fruit loop – What if they ask me about it???, etc.) because I make these. While you do need to listen to what your body needs for rest, don’t allow yourself to just make excuses. Social involvement is so, so, SO important for mental and emotional health (yes, even for us introverts), and it’s something that we need to be intentional about to make it happen.

Sometimes it’s hard, sometimes it’s awkward, but yes, it’s worth it.

Is anyone else a member of the tupperware-toting club? Anything else to add to the list?

This is your reminder to get some fresh air today, whether you’re able to go on a walk or run, sit on a porch swing, or simply open a window. I’ve been at all of those points and ALL are worthwhile.

Today, I was blessed to be able to go on a walk/run. It was slow and ugly, I’m hurting more today, and the tiny human is a grumblepuss, but it happened (albeit, very grudgingly at first). I got to feel my blood pumping, smell the rain moving in and the fresh cut hay by our house, and hear the wind moving through the grass. Life may not be pretty, but the little things are remarkable. Getting fresh air helps me to remember that. It’s sure beautiful to me.

Hi there, friends! I hope all is going well with everyone. Life has been pretty crazy here as we recently purchased a cold weather garment making business and I have been neck deep working on all of that!

In honor of National Scoliosis Awareness Month, today I’m featuring an interview with a sweet sister in Christ I met while in college who lives with scoliosis and is one of the hardest working, most adventurous, and most resilient women I’ve met.

Take it away, Korah!

Can you tell me a little bit about yourself?

My name is Korah Bouma, I am 22 years old and 7 years post spinal fusion. I am a student at the University of Wyoming, hoping to graduate in spring of 2019. I was diagnosed with scoliosis at age 13 and had surgery a week before my 15th birthday (Huge bummer, I had to wait to get my driver’s permit!).

For our readers who aren’t as familiar with scoliosis, could you explain what it is, diagnosis, treatment, and long term prognosis? What has your journey with scoliosis been like so far?

Scoliosis is a sideways curvature of the spine that usually reveals itself during puberty or a growth spurt. It can be caused by cerebral palsy or other congenital conditions but it is mostly idiopathic, that is, we have no idea why! The prevalence in adults is roughly 1 in 10 and usually minor cases, for unknown reasons, girls end up with rapidly progressing curves that need treatment more than boys. If diagnosed early in children, a brace can be prescribed to stop the curve from becoming more severe, and people generally have a normal life after the brace is removed with minor pain. Shailene Woodley wore a brace all through the filming of ABC Family’s “Secret Life of the American Teenager”!

For the rapidly progressing, major cases, like mine, surgery is required. Spinal fusion is an extremely invasive surgery, I was in the hospital for a week and once I got home, could not do anything without help. The surgery involves 2 rods and a varying number of screws (20 for me!) depending on how many vertebrae need to be corrected.

Sadly there is no real cure for scoliosis. This surgery does not cure scoliosis, it just makes life easier for the patient. If the curve were allowed to progress, the spine will rotate and twist pressing on organs and in severe cases cause death.

After the fusion, I still have a 25 degree curve in my lower back but the majority of my back is stiff as a board! Hearing about this makes some people uncomfortable, think about never arching your back! It is not something I ever think about, it is just part of life for me now!

Korah’s spine pre-fusion

What has been the most challenging part of living with scoliosis and how do you overcome that challenge? Are there lifestyle things you do to help you thrive with scoliosis?

The challenging thing about scoliosis, and the reason I am contributing to this blog, is that it is a chronic illness with chronic PAIN. For me that pain manifests in pinched sciatic nerves, sore neck and shoulders, and my lower back takes a lot of the tension that comes with bending over. Just doing the dishes or laundry takes a toll.

To fight this pain I have gotten into yoga. But not yoga like you might imagine, no complicated twisting or bending over backwards. Julie Wilkins of the blog Forever Fused, is a yoga teacher with a spinal fusion herself, who specializes in building mobility for people with spinal fusions. She has videos showing proper lifting techniques and safe stretches. I suggest her videos even to people with normal spines, everyone needs to be aware of their back! Her work has changed my life because there is little to no support for adults living with scoliosis.

What do you do to take care of yourself mentally and emotionally?

Scoliosis is seen as a “teen” problem, an awkward phase you grow out of. You might be thinking of some movies or shows where the nerd wears a brace; think Joan Cusack in 16 Candles, Dee Reynolds the “titanium monster” in It’s Always Sunny in Philadelphia.

There is not a lot of scientific or medical support for post-fusion people. Julie Wilkins is changing that by creating a community of people who share the same trauma. That is the key I think, community!

I am also a part of Wyoming’s chapter of “Curvy Girls Scoliosis” which is more oriented towards adolescent girls. We meet every month and commiserate, socialize, we are even planning a photoshoot to showcase the beauty of different bodies.

If you could give one piece of advice to someone with chronic pain, what would it be?

My advice is, find people who have faced the same trauma you have. You are not the only one feeling overwhelmed by your diagnosis. Process that trauma and don’t ignore it.

Looking ahead, do you have any big plans? Does scoliosis impact those plans at all?

For the future, I think about having kids and the extra toll that will take on my body, not to mention my post-surgery anxiety towards hospitals. I think when that time comes I will look into some sort of counseling. Other than that, I go to work, school, play sports with no problems. I know my limits and if I stick to them, it doesn’t keep me from doing what I want to do. I actually just got home from a 3 weeklong trip in Israel where we were walking 5-10 miles every day! Find a way to do what you want to do!

We would love to hear from you!

Do any of our readers live with scoliosis or have any questions? We would love to hear your story :).